For those who have never lived it . . .

Few things are as hurtful as those well-meaning (and I use the term loosely) people who will say things like, "We kept Mom with us to the very end. I would never put her in a home," or "I don't think I would have been much of a child had I sent Dad to a nursing home."

Really? Is that what you think? We don't love Mom enough to keep her with us? To them all I can say is: "If you haven't lived it, please don't say anything.You have no clue." And if I were to wish to be as hurtful as they are I would add: "And you are the meanest jerk on the face of the earth." I might even add some expletives, but I'm trying to cut down on my swearing. Mom always said: Swearing is the sign of a weak mind.

There is nothing more heartbreaking than having to visit Mom in the nursing home. My heart aches every time I walk into the building and search for her (she likes to wander) only to find her sitting in her wheelchair staring absently at a television screen. She has learned how to scoot around the building (in her wheelchair) and one evening my sister found her in a lounge area staring at a wall. Apparently she could not figure out how to move backwards.

Wouldn't it be wonderful if we could bring Mom home and assimilate her into the household once again. But Mom isn't Mom any longer. She can't do simple things like bathe herself, brush her teeth, use the toilet or get in and out of bed. Mom can't even communicate with us. We have no way of knowing what she is thinking. What she wants, or what she would like to do. We sit and hold her hands. That is it.

Mom needs round-the-clock care. She needs things one family can't provide for her.We know. We tried. It is exhausting. It is a strain on marriages.

Mom could not be alone. Ever. She panicked when we went into the bathroom. She panicked when meals were not on time. She couldn't sit through grandchildrens' sporting events. Someone had to stay home with her. And guess what? Babysitters for an adult are impossible to find. So your Mom/Dad stayed with you for a month? How nice for you. Did you have to bathe him/her? Did you have to change his/her diaper? Could you still go to a grandchild's sporting event? Did you and your husband/wife have the opportunity to have dinner out? Did you give up a paying job to care for her/him? I thought not.

I don't write this as a means for alleviating the guilt we feel for not being able to care for Mom. It is a cold, hard reality. We could not do it.

I've heard people suggest hiring in home care. If Mom and Dad or my sisters and I were rich, maybe that would have been an option. But at $112 a day (average cost) and the care not covered by insurance -- who would shoulder that responsibility?

I wish there were easy answers. I wish our Mother did not have dementia. I wish our Father were still here to help take care of her. I wish "well-meaning" people would just keep their mouths shut.

P.S. I should mention I do know a family that opted to hire in-home care. I admire them. I envy their resources. And am impressed by their tenacity and dedication. Kudos to them.